Partnerships and the Paradoxes of Parenting Children Living with Illness

Abstract

It seems obvious to state that children need parents, but yet in stating the blindingly obvious, we can sometimes uncover neglected ideas, hiding in plain sight. As Mayall (2002) pointed out, children need an adult who is available and reliable. It does not matter who that is, but an adult must fill this role to facilitate children’s maturation into adult society. It seems equally obvious that illness would disrupt a child’s relationships. Lastly, it does not take a genius to observe that nurses work with children and this requires them to work with those who care for children (in the main, the available and reliable adults in the child’s life). So why have nurses paid so little attention to the ways in which children living with illness are parented? Sure, there are papers on parental coping with specific diseases and conditions (Allen, 2014; Cataudella & Zelcer, 2012;Wei et al., 2016) and work by psychologists on parental coping (Darlington, Korones, & Norton, 2017; Heath, Farre, & Shaw, 2016), but very little from nurses (Coyne, 2008). Consider that nurses rely on parents to deliver care. Indeed, nurses might want to facilitate and encourage parental care as an experience of childhood, because children benefit from being looked after by their parents (carers) when they are unwell (Randall, 2018). This experience might be shared with other children who have illness in childhood or other challenges and who are supported and nurtured by their parents (carers). Yet we have no measures to assess how well parents are parenting a child who lives with illness. We do not have a valid and reliable way to determine if parents are able to undertake their role as parents, nor if they have the capacity, skills, and understanding to deliver nursing care delegated by nurses and the medical team. Often nurses will use an intuitive approach, such as, for instance, stating that families are not coping or mothers/fathers are close to breaking down! While intuition can be helpful it can also be subject to unconscious bias. Some carers may show their distress when feeling under pressure, others may seek to hide their distress or display behaviors that nurses do not associate with being unable to cope. Thus, while intuition may identify some parents who are struggling, it may not help nurses to identify all parents. If an intuitive unstructured approach is adopted, there is also a danger that those who shout loudest and in behave in